Best Day Ever

 "Mommy?"

Yes, love?

"Today was the best day ever."

I agree.  It was only missing Daddy or it would have been perfect.

More pictures from our best day ever (earlier this week) to come soon.

Love Songs & my Little Loves

This girl loves her Dada!  She will hardly ever say Mama... but Dada...

she is in love - she squeals his name & kicks her legs with excitement when she sees him!

(me?  Oh I just carried her for nine months and birthed her and you know - provide her with life sustaining milk... no big deal.) ;)

I love that she is a Daddy's girl.

And finally...

Will has a buddy to play dress up with!

Remember this?

His pirate birthday party just before Ellie's birth - she went as "Captain's Girl" as Ellie in the Belly...

And of course... how could I forget how he longed to have a future pirate playmate...

so much so that when she was Ellie in the Belly - he used to put a pirate hat on my belly to make her play with him...

and of course, there was this moment - 

the day of her Birth day - when Will (then 2) described how he was going to teach his new baby sister to be a pirate.

Well - he did!

And he is also teaching her to be a firegirl...

I love watching them become buddies.

What an answer to my prayers!

I'm always so proud of Will when he figures out ways to use both hands to hold two items - 

Way to go Will - he figured out how to fight with two swords this week!  (Using a sheath for his left hand.)

I am loving these warm days.  It's hard to believe it is winter!

In the late afternoons, we've had fun playing outside!

Will is performing some acrobatic tricks!

and learning how to roller skate in the garage

I love mornings at the museum with friends!

and this girl's "Mad face" performed on command.  

Cracks us up every time!

and is usually followed by a "happy face!"

I love birthdays spent with friends

(Happy Birthday to R!)

& homemade t-shirts that make us laugh

I love that my mom surprised us with a Birthday lunch for R!

Lucky birthday boy - got to have a birthday dinner in West TX with his side of the fam, a birthday lunch with my side of the fam, & a bday dinner with good friends!

I love the battle scene in my living room-

the nativity characters of Mary & baby Jesus and Joseph along with Lightning McQueen ready to fight the bad guy dragons & knights.

I love him receiving mail this week - a picture from a little girl in his class.

And his excitement!

"Mommy!  Isn't this a great day!?!  Playing at Lovie's, our flowers (paperwhites- my very favorite for the winter- i adore their smell & tall stalks & delicate blooms) are blooming, & a letter from J!"

"Mommy - I love J & you."

Yes, he's a happy boy.

And you know what else I love?

I love their breaths - I just inhale their scent and I have ever since they were first placed in my arm.  Will is well trained to just let me breathe him in.  Although lately, his breath is kinda stinky in the morning - I blame that very loose tooth.  I'm sure there's all kinds of junk trapped in under that looseness.

His has always been rather warm and vinegary.  

Hers?  It's so different - but just as lovely.

I love love love their giggles!  

And I can't figure out how to post it here because it recorded it with the voice recorder on my phone.  

But trust me. 

Makes my day!

I love that Will makes up songs for Ellie.  And if she is fussy, nothing can make her as happy as her big brother singing to her.

And he knows it!

I've recorded these too as we drive around but I can't figure out how to post. :(

The one he sings the most goes like this,

"Oh Ellie, my Ellie.  I love you forever!  

Oh Ellie, my Ellie.  You are mine!

Oh, Ellie, my Ellie.

I love you.  I love you, my sweetheart.

I love you.  I love you, my sweetheart."

Oh how I wish you could hear this high pitched, precious voice singing to his sister at the top of his lungs.

And he has memorized it so I hear it daily.  

Be still, my heart.

And the day he amended the song to add the line, 

"I used to be the favorite kid in the world until you came and now you are the favorite."

I had to stifle the laughter...

(& reminded him he is the favorite boy still!)

I love that they each will cuddle with me and that they love stories.  Ellie reads at least three stories before nap and bed and likes a book in her lap which she "reads" (aka babbles) through while we drive.

Will is getting close to reading and continues to love stories.  

I love Friday afternoons - when I crawl beside Will in his bed, read a story, & give my myself permission to promptly fall asleep for 30 minutes while he naps.

I love these two ...

how blessed I am.

Yes! Again & Again & Again

Yes!  I said.

Well... after I kissed him repeatedly.

I'd say it a thousand times over if he asked me again today.

We met and got to know each other half way around the world in Spain.

We dated for nearly 2 years before he asked me the big question.

I'm not sure I've ever told the story here and I happen to think it's a good one. 

:)

In our family, we have "figment" stories.  Stories we tell our children from when they were just "figments of our imaginations."

(R always claims that they were very small figments for him whereas I spent many years imagining myself as a wife and mommy.)

Today, I told Will and Ellie the figment story of when Daddy asked Mommy to marry him.

Nine years ago today.

First, he drove to my hometown the week before and sat on the dock at the lake with my parents where he told them why he loved me and asked for their blessing on our marriage.

I, of course, was oblivious that day that he wasn't in town.

Last week, my dad emailed us an excerpt from his devotional that day - he had marked in his book that R was on his way to town to "talk."  Nine years later he came across his notes from that day.

How precious to us that we have parents who believe in the sanctity of marriage and who not only showed us by example but prayed for our future spouses and instilled in us a respect for the holiness of marriage.

I digress.

On the dock, he was given their blessing.  And the planning began.  

Apparently, he also handed them plane tickets.

Meanwhile, I was teaching school.  R asked me to accompany him to California where supposedly he was considering a few graduate schools.  We had talked about getting married someday and so he wanted my input on those potential schools.  Naive person that I am, I bought a map (the laminated kind) of Los Angeles & circled on it not only schools for him to look at but also potential nearby schools for me to teach at that I wanted to check out.  I remember being so worried about the two of us trying to navigate LA traffic together.

So, off we flew on our little adventure.

When we got to CA, we never went to LA.  We went to Orange County and specifically to Dayna Point.  We rented a car (you know - for exploring those schools ;)) and went immediately for a walk on the beach.

Where we had a fight.

I wanted him to be romantic as we walked the beach. 

He was distracted from me.

(Apparently he was searching for a perfect place to pop the question.)

Then we went to dinner.  At a super yummy, super expensive, beautiful little French restaurant.  We were both scared to spend so much money I think we ordered the cheapest thing we could find.  I'm pretty sure I ate French Onion soup.  R was too nervous to eat.

Afterwards, he kept glancing at his watch and he asked if we could go get coffee.

After that, we drove Highway One for awhile - enjoying the views before heading back to Dayna Point.  Suddenly, as we pulled into the parking garage, R began kissing me repeatedly.

This was not like him.  He is a very cautious driver.  But I was thrilled with his sudden burst of affection.

(I didn't know it but he had flown my parents there and he had spotted them in the parking garage arriving from their late flight and he was afraid I would see them to.  So he distracted me from seeing them by kissing me.)

Then he asked me to go on a walk with him.  I remember we walked down a big hill to the beach.  I was wearing my famous black engagement dress.

(Ya'll.  Several of my friends over the years have worn this dress and ended up engaged the night they wore it.  It apparently is a magic dress.  Just saying.)

In wearing that dress, I didn't really think he was going to ask me to marry him that weekend but I was going to do whatever I could to push him that direction. :)

I think the dress may have helped.

It was cold and windy on that hill so he shared his coat with me.  

We got to the beach and took a little walk.  

Suddenly, out of nowhere, I turned around and he was down on one knee.

And then he asked the best question ever.

And I couldn't help myself.  I began to cry and kiss him.

I think he had to ask me for an answer.

Yes.  A thousand times yes.

He began to get a little nervous  - on a beach at night in CA - so we headed back to the hotel.  He had gotten each of us our own room.  We were not yet married and it was important to us to honor each other and God and his His purposes in marriage.  He walked me to my room where I was dying to call my parents.  He pulled out several phone cards (I know.  phone cards.  Before the days of using cell phones for everything!)  And just as I picked up the phone to dial my parents, he said, 

"You don't have to call them.  Let's just go tell them!"  

And I squealed as he grabbed my hand and we ran down the hallway to my parents' room.

They were anxiously waiting with champagne and our first engagement gift.

We told them the story and laughed at R's trick kisses to distract me from nearly seeing them. 

We cried.  

We missed having R's parents with us - they had planned on coming but his mom had become very sick from a recent trip to China and was unable to fly.  So, we called them excitedly to tell them the news.

We made a list of all the people to call the next morning.

We took pictures and celebrated!

And then my parents got to stay all weekend and take us out to dinner (after our Friday night expensive dinner, we were so thankful to have them around Saturday! :)) 

I loved having my mom there to begin wedding planning and dreaming with.  

What a fun weekend.  

I love that he made it special. I love that he put so much effort and planning into such a significant question.  I love that he was romantic and wanted it to be unforgettable.  I love that it is a fun "figment" story for our children.

I love that he said this morning he would ask me again.

7 months later - 

We married!

(wedding photo courtesy Sam Smead Photocreative)

Masterpieces

photo courtesy of www.leonardoshands.com

Recently, while researching our uppers specialists, I found something interesting about one of our Boston doctors.  He is part of a project that is studying the art of Leonardo Da Vinci and the hand differences found in some of his art.

Yes.  You read that correctly.

Did you have any idea that Leonardo Da Vinci featured hand differences?

Like that picture above?  They've diagnosed the hand difference there and it is found in the painting of The Last Supper.

Whose hand is that in the painting?

Jesus.

There are several theories as to why the master artist would have given Jesus a hand difference.  It was a fascinating article.  You can find it at www.leonardoshands.com.

Apparently this is not the only piece of art by Leonardo that features a hand difference.

As I read about the project, it kind of sounded like a real life Davinci's Code - except less about religious artifacts and twisted scripture and more about art and medical conditions.

Jusepe de RIBERA (Játiva, 1591-Naples, 1652)The Clubfoot1642
© Musée du Louvre/A. Dequier - M. Bard

This painting shows a young boy with a clubfoot.  It is hanging in Paris in the Louvre.  I came across this early on in my research about Ellie's arthrogyposis.  I think the boy is smiling and that makes me happy.  He is also standing.

I have no idea what this history of this piece is or why the artist chose to include a club foot.

Or there's this, by Rembrandt.

photo courtesy of The Met.

Rembrandt was Dutch. And Holland has windmills.  There's an essay that anyone who has ever had a special needs child has read entitled, "Welcome to Holland."  Since first reading that while pregnant with Will, I developed a love for windmills.  I have a framed painting in our living room of one that my grandmother brought me from Holland.  I love the reminder that though this may not have been my plan, initially, it's a good plan and here in Holland, we have windmills.

I'm not an art historian by any means.  I enjoy art and I love history but I couldn't begin to explain these pieces.  I just know that it makes me happy when I see differences featured in art.  When they are not on display or exploited - but just a part of a person's body.  Because God created all different types of human bodies and the body is beautiful - in whatever form it may be in.  

And I can't help but wonder, how many millions and millions of people have observed some of these pieces of art?  How many have travelled to Italy to stand in the nearly ruined monastery in Milan?  How many have passed by Ribera's painting in the Louvre?

And I wonder how many saw the art, and not the medical condition?

How many discussed its beauty and never noticed any difference?

How many praised the master artist?

My children are art too.  They have a Creator who designed them with a meticulous eye for detail.  They are beautiful works of art created by a Master Artist.

It is my prayer that people would see the masterpiece, that they would give credit to the Artist and that the difference?  The medical condition?  It would just be a detail among details in the masterpiece.

Timelines

She's on her own timeline.

It's something I've been reminding myself repeatedly lately.

It's my new mantra.

With the birth of each of my children, some well meaning person in the medical field has handed a page like this to me.

They clearly don't know my obsessive tendencies.

They don't realize I will put it on the fridge and highlight (for Will's) or check off Ellie's every single accomplishment.

They don't realize that I will use it as a measuring stick for my mothering abilities.

That I will gauge success based on this single sheet of paper.

It's actually been months since I looked at Ellie's.  I knew it was there, hanging on the door to the fridge in our laundry room.  But, I've ignored it.

Because she had dropped so far behind in several categories that it was easier to ignore the chart.

I wasn't ignoring the delays.  She is in lots of therapies and her therapists and doctors all reassure me that we are intervening, she is making progress.

It's just not on the same timeline as her peers-

the babies this chart is written for.

So I've ignored it.

Until last night when I spotted it and pulled it down to take a look.  

I began checking off some things.

I noticed that yes, we have some significant delays in some categories. 

But.

In others, she is right on target or slightly advanced.

I suppose that because a lot of her "free play" is spent sitting, she has developed slightly more advanced skills in things like stacking or turning book pages.

I was going to throw out the chart. 

Until I noticed that not every single category was delayed and maybe this was good to keep (in a more out of the way location) to remind me every now and then of just how far she has come.   Not to compare her to other babies - but to reinforce to me that it is her own timeline.  So I fought the urge to burn it &  put it away in her baby book - I want to remember what she did accomplish.  I just need to stop using it to compare or to measure success.  And I don't want it hanging over my head - with those delays glaring at me.  She's on her own timeline.

 In Bible Study Fellowship, we are studying Acts.

This week, I noticed two things about God's timeline.

(For starters, it is not my timeline.  Rarely does He operate on my timeline.)

1.  There was a man who was crippled.  He sat outside the temple gate and was given the gift of physical healing by the apostles as a "sign and wonder" to give glory and witness to God.  His story is described in Acts 3:1-2.

Here's the interesting part for me.

He was over forty years old. Which means that he had likely been at that very gate during Jesus' ministry.

Jesus performed acts of physical healing.

Yet.

Jesus had chosen not to heal this man, most likely.

I'm guessing it is because Jesus knew there was purpose in this man's differences.  

Jesus knew God would get glory for this man's story ...

and He was operating on a different timeline.

The healing would come - just on a different timeline.

Wow.

That hit home for me.

Not because I am praying for some sort of physical healing for my children.  I believe my children are whole as they are.  Yes, they are different and they have challenges... but they are precious and fearfully and wonderfully made and they are perfect for our family.  I love their handprints and their footprints and their bodies.  What I believe is that God is more interested in the conditions of our hearts than He is in the conditions of our bodies.  

And several years ago, I was strongly convicted that while God most certainly can "heal" them physically, He is getting perhaps more glory from allowing us to live this story as they are.  I realized that if He did a sudden miracle and provided Will with, say, hands & feet, while He would get glory for that & we would tell the story.... at some point  we would stop talking.  At what point would we just accept that he has hands and feet as "normal?"  At some point, I think I wouldn't tell total strangers.  It wouldn't just come up because a stranger wouldn't be able to tell by looking at him that a miracle had occurred.

As it is now, it's an almost daily conversation for me with a stranger.  And my children are miracles.  The fact that he runs - is a miracle - and people witness that every single day.  The fact that Ellie is alive - miracle.  The fact that she has such great function or contentment despite all she has been through - miracle.  The fact that Will's speech is so good - miracle.   The fact that he laughs - miracle.

And I am constantly having conversations with strangers - because they see these children with differences and they ask questions or make comments and I have the opportunity to share of the grace of a God who lets me parent them and who has made them so precious and perfect and Who does miracles every day with them.  And when they don't ask but simply stare - they see God's miracles in a boy who runs or a girl who smiles and cheers.  And they hopefully see God's joy as we get joy from parenting them.

I believe He is operating on His own timeline in our lives - He is hopefully getting the glory for the story we have been given and He is not finished yet with our children or our family.
It doesn't take a "physical healing" in the sense or the timing we are expecting in order for a miracle to occur.  And sometimes, there is purpose in the waiting - there's a greater plan at stake.

2.  Paul, after his conversion on the road to Damascus, did not return to Jerusalem immediately.  (Acts 9 & Galatians 1) In fact, he spent three years in Arabia.  This was probably not in his original timeline.

But, it was God's.  God had him waiting in Arabia for three years preparing for his ministry that would radically change the world.

So often, I want change and I want it now.

I want to see results now.  

I desperately want to see results from Ellie's therapies.  I want to know the outcome of all we are doing.  Will she walk?  When will she walk?  How much assistance will she need and for how long?  I sense her frustration as her brain is at a nearly 14 month old stage but her body is not there yet - not anywhere close, really... and she is frustrated.  And I hurt for her.  Especially lately.

But I can't force results.  I can't force change.  I am in a waiting place.  For awhile.  

The good thing is, I have a precious girl in my arms (a lot - she is a mama's girl!) to wait with me.

And I'm learning a lot about being content.  And waiting.

And somehow, when I think about timelines and God's timeline and when I see in His word how His timing had purpose  - it helps put my concerns back into perspective.

Are you in a waiting place?  Do you feel stuck in a timeline that is not your own?  Did you have expectations for how life should look at this point that are not being met?

How is God using this time for you?  Do you ever get glimpses of purpose in His timing?

Hard Questions & Miraculous Meetings

He asks the hard questions a lot lately.  They come out of nowhere - while we're in the car or at the grocery store choosing ingredients for taco salad.  It always catches me off guard and catches my heart somewhere in my throat.

He says while going to a new friend's house to play, "Mommy, why are my hands different than yours?  I want hands like you guys.  I'm tired of people asking about my hands, saying, 'Will, why do you have hands like that?' I want a robot that is a hand switching robot."

He comes running from his room while I stand at the kitchen island, wearing his Boston Red Sox hand on his hand shouting, "See!  I have hands like you!  You told me they wouldn't change but they did change!"  He pretends.

I've had four years to prepare and yet I'm caught unprepared every time.

How do I answer him?  How do I explain to a three year old who is so far beyond his years in maturity, what I do not fully understand myself?  How do I convey my conviction that God has such great purpose for him and his hands and his feet?  How do I, believing John 9, claim that for him?  How do I teach him that I do not know the why?  Doctors across America have tried so hard - I've given so much blood for testing - just in the last three months I have given 57 vials of blood.  And yet, science can not explain.  God is bigger than science.  I don't understand His ways but I do know He made my children fearfully and wonderfully.  Sometimes, the human mommy in me wants to shout, why us?  Why do my children need additional challenges in life?  Why must they endure so much more?  Couldn't there be other ways to accomplish Your purposes?

I don't fully understand.

Yet, I absolutely know that He created them with intent and purpose.  He has used my children already far more than I could have ever imagined possible.  He has blessed us over and over again - in ways I don't deserve but am so thankful for.  And if I got to choose, I wouldn't want his body any other way.  His character is stronger because of his life experiences.  His body is precious & perfectly made.

How do I respond to my inquisitive child, to help him embrace his body?  Can I tell him enough how much I adore his hands and feet?

Can I reassure him adequately that he is fully capable?

Can I praise all that he can do & and all that He has done for him and He will do for all of us?

How do I look into those big blue eyes and tell him, again, that these are the hands and feet God created.  These are the hands and feet he was born with.  These are the hands and feet he will do big things with.  How do I tell him, again, that there are no hand switching robots.  How do I tell him he can do anything?

How do I walk that fine line of helping him move past questioning and into acceptance, of acknowledging his pain and his questions without allowing pity, of celebrating who he is?

There are moments I just want to be numb to these questions.  Moments I don't want to deal with such issues.

And after a week of these sorts of conversations and quiet tears filling my eyes behind sunglasses - not because of his body but because of a hurting little heart, a boy trying to grasp such grownup mysteries, trying to understand who he is,
after a week of this,
Saturday came.

And Saturday, after a series of emails, we skyped with a new friend.    My little brother found him via an article in newspaper printed online.  A married, father of four, professional with multiple degrees, who took time to meet us via Skype.  We span two different countries and vastly different climates.  Yet, we share the exact same diagnosis.

There's so few in the world - a handful really.  What an incredible opportunity to meet.

For the first time ever, Will met someone with his same diagnosis.  Will high-fived the computer screen with someone whose hand matched his own. He kept asking to see again.  He asked about the man's zancos.  He said "Nice to meet you" and I thought how thankful I am for someone for Will to meet - a man further along on this road whom Will can consult with specific questions/challenges as he meets them.

A friend and a resource when I can't answer the hard questions.  When I can't relate and my heart breaks at that, finally, someone who can.

My eyes filled with tears again.  Celebration tears of joy at such a meeting.

He gave us such insight and advice from his own experiences.  He affirmed us and confirmed things for us.  He offered encouragement and hope and wisdom and humor.  He met with R & I for an hour ...

And then Will met him.

Will's loneliness he has expressed recently in "not having hands like you guys" was eased today as he met someone with hands and feet like his.  He's not alone in this world.

And I am so thankful.  Thankful to be his mommy and that I get to share in this journey of discovering who he is and who he will be with him.

It doesn't make the questions easier.  It just somehow makes them sweeter.

Together, our hearts all breathed a sigh of relief.  Finally.  Finally we have met someone who gets our son and his story.  What encouragement he had to offer us.  What insight and wisdom and advice on bullies (prosthetics make good weapons) and advice for a mommy and laughter.

One of the best ways I can think of to spend an hour on Saturday.  We are thankful.

Receiving Grace

Serve wholeheartedly, as if you were serving the Lord, not men, because you know that the Lord will reward everyone for whatever good he does, whether he is slave or free.

Ephesians 6:7-8

Your attitude should be the same as that of Christ Jesus:

Who, being in very nature God, did not consider equality with God something to be grasped, but made himself nothing, taking the very nature of a servant...

Philippians 2: 5--7

In the last 4 years, we have been humbled to receive grace from others.  We have been wholeheartedly served by so many from all over.

During this recent spica season, when so much was required for Ellie's care, we received a concentrated dose of extra service.

We are humbled and so grateful.

I have been asked often of late how these months of Ellie in a spica and moving have been.

To be honest, I completely dreaded spica season.

But, my response to that question?

It has been good.  It has been far better than I ever imagined.

Good?

How has having a baby in body cast been good?

Because others have served our family, caring for Ellie, while time consuming and difficult at times, has been manageable.  Actually, it has been more than manageable.  This has been a good season for our family.

Because others have served our family, I have found time to just be mommy or wife, rather than always a caregiver.

Because others have served our family, I found brief moments of respite - time to walk outside with a friend and feel refreshed and reenergized  - because someone was inside with Ellie doing her cast care.

Because others have served our family and provided meals, I haven't fallen prey to the temptation to serve frozen, prepackaged meals or order pizza or carryout every night.  I love to cook but with moving and cast care, I simply don't have the time to cook nightly.  With meals three nights a week, I have been able to count on homemade, nutritious meals for our family.  And I've been able to significantly decrease the amount of trips to the store I would have to make - trips spent wearing Ellie on me as she doesn't fit in a cart.

Because others have served our family and provided cast care, I can spend a little time being a mommy to Will, take a walk with a friend, do the dishes, return a phone call, take a shower, or even just comfort Ellie, rather than always being the one to inflict discomfort on her.  I get tired of always being the one to hold her for shots or xrays, to do her stretches and therapy, to force her into uncomfortable positions, to do her cast care, to do her taping, to hand her off for surgery and be with her upon waking.  It's nice to sometimes just be her mommy and let someone else do the unfun stuff.

Because others have served our family and done diaper prep, I could spend the time I would have spent cutting and taping poise pads with our family.

Because others have cast cooled Ellie, she was comforted and I found a little bit of time to escape cast care - to find a glimpse of "normal" 

Because my mom has helped out with middle of the night cast care, I have gotten more nights of sleep than I anticipated three months ago.

Because people have reached out to serve us and practiced hospitality, we have made new friends and, again, received a respite from cast care.

Because others have served us and come over to hold Ellie, my back and arms have received little breaks!

Because others served our family and packed up much of our home, we were able to survive a move with small children (& one in a spica cast) without killing each other.

Because my inlaws served us by driving a car for us across Texas to  our new home, I was able to fly with the children.... rather than drive alone with two children.  Can you imagine if I would have had to do Ellie's cast care routine on the side of I-20 every two hours?  Not to mention if there would have been a diarrhea disaster!?!

Because my parents have served us, we have been able to live with them while looking for a new house.    They have opened their home to us and helped immensely with children and cast care.  And, they've even partially moved out of their home to the lake (on weekends) so that we can have family time just the four of us.

Because my mom has taken many of the 3:30am cast care times, I have been able to sleep more nights than I anticipated I would going into this.

Because friends have gone out of their way to serve me by dropping off or mailing  little surprises (my favorite drinks, a cd, fun duck tape for cast care, a spica outfit for Ellie, muffins, etc.) we have found ourselves smiling - even on hard days.  And sometimes, just knowing someone was thinking about us and recognized that this was a particualarly difficult season, was so comforting and eased our sense of loneliness.

We have been served with emails and phone calls and texts just to check on us - and no expectations that we return those in a timely manner and grace for days when we completely forget to respond at all.

We have been served by others opening up their homes to host Will for playdates.  This has given me time to do the more time intensive labor of cast care (taping & moleskin) and it lets Will have fun and run off energy.  

I would generally say I am a very independent person.  I don't like to admit to needing help.

But.

For the past four years, I have learned how to accept help.  I have learned how to receive grace.  

I think that perhaps the biggest testament to the love of God we can give is when we serve others wholeheartedly, expecting nothing in return.

The body of Christ has served our family.

We are so thankful to so many who have served us:

those who have lovingly cooked for us

those who have lovingly cast cooled Ellie

those who have lovingly held her or rocked her so I could get something done

those who have sent us fun little surprises

those who have humbled themselves to cut and tape Poise pads

those who have hosted Will for playdates

those who have come over to play with Will and Ellie 

those who have kept Ellie so I could go for a walk with Will and friends

those who have given of their time, their money, their sleep (thanks mom!), their creativity, and their love to serve our family

It's exactly what I think Paul meant when he instructed us to be like Jesus the servant.

(***disclaimer - I've tried to take lots of pictures of those who have served us... but, sadly, they were on my phone that met its untimely demise  recently.  Sorry!)

From the bottom of our hearts, thank you.  Because of you, this time with our baby girl in a spica cast has been far better than we ever imagined possible!

And, just for fun?

Might I make some suggestions?

Perhaps you know a family in crisis.  Perhaps you know a family that could use some practical help for a season.  Maybe you are in the throes of crisis yourself. 

Looking for some practical ways to serve others that we have found especially helpful?

• meals - www.takethemameal.com - my friend, Sarah B., from our church in West Texas found this site & used it to coordinate meals.  It was great!  It emails participants reminders and allows them to sign up online to take a meal to a family.  It also provides participants and the recipients with a menu so you know exactly what you are getting when (& so givers know if you've already had lasagna or spaghetti or taco salad or whatever three times that week.)  When we moved, my mom copied Sarah & used that site with their friends and sunday school class that were offering meals.  We used it also for people to sign up to volunteer time for cast care.  It's really quite helpful!  I believe it is also free!

•    respite care - When a family is in a crisis sort of situation, offer respite. (I hate  the word, "crisis" - I just can't think of another word to describe this season that is even more involved than our typical life of managing life with two kids with medical needs.)  Offer to sit with a patient to give a caregiver a break.  Tell the caregiver, lovingly, that they need a shower & force them to take one!  Force them outside for a walk - it does wonders for the soul and can quickly refresh someone.  Take their children for a little while.  Give them a brief break.
• 
  
• creativity - When a family is in crisis, offer creativity.  Drop off something to cheer them up like a favorite drink, a starbucks coffee, a good book, a hot lunch, a cd, a funny card to give them a laugh, etc.  Running through Sonic?  Grab one for a friend in need & drop it off on the porch - text them to let them know - it's 15 minutes of your day but may bring them a smile to be thought of.  One of my favorite things was when people came up with ideas for Will and I to do together and then made it happen.  When I am too tired and out of creativity, I have depended on others who have come up with ideas for activities for Will and I.  People like Susan or Haley gave of their time to research ( & purchase) clothes made for spicas and fun duct tape for cast care.  I can't tell you how much joy it has brought me to make this spica a bit more fun with colorful tape!  I have been so grateful for clothes that fit her cast and are soft and comfortable for sleep.  Send a card - just a "thinking about you" kind of card or even an email or text.  Sometimes, these seemingly little gestures are so significant - they let the recipient know they (& their crisis) are not forgotten.  They can perk someone up on a hard day and remind them they are not alone.
   These aren't necessary to helping a family survive a crisis.  But, this can help a family thrive in crisis.  
• talents - Use your talents.  Terrible cook and no interest in providing a meal?  No free time or have small children and so unable to offer respite?  But, perhaps you have a skill you can offer?  Perhaps you can sew like our friends Bonnie & Christie who made special spica dresses for Ellie.  
• Help with Life- I've also appreciated people who stopped by for brief little periods of time - willing to just do something - fold towels, pack boxes, quickly do a load of dishes, etc.  A huge help for me has been someone to run errands for me.  I have taken my kids on errands and to the grocery store while Ellie is in a spica.  It's doable.  But it is hard.  She doesn't fit in the grocery cart & her car seat isn't removable so I must wear her in my carrier.  I love my carrier and am thankful to have found one to fit her in spica but it's not a good fit - the spica makes it awkward.  So, while it does hold her & therefore frees up my hands to push the cart, it's taxing.  Essentially, my back pain which is concentrated generally one area from holding her in spica so much, is just distributed more evenly. :)  Going to the store with both kids involves me wearing her & Will wearing prosthetics  and me preparing myself for the idiot checkout girl (sorry - sore spot) who asks how I broke my baby's legs... it's a doable thing... it's just hard.  I have been so thankful for those who have emailed me that they are headed to the store the next day - I email them a list and they drop by my groceries & I write a check.   (A friend once shared with me that she grocery shopped for a friend in crisis for a whole year & her friend wrote thousands of dollars in checks to her that year.)

Even when a family is in some sort of crisis, life still goes on around them - picking up their dry cleaning, groceries, filling the car up with gas or getting the oil changed, taking the animals to the vet, just errands of life, can be so helpful.  Stopping by someone's house to pick up laundry to fold at your own home & at your own convenience  - this can be a huge help.  Many of these ideas can be done on the schedule of the giver.  

• Don't ask.  I am often too tired to know what I may or may  not need help with in upcoming days.   I also don't want to feel like I am overusing or abusing someone's generosity or willingness to help.  Plus, I never know how much someone is willing to do.  I don't want anyone to ever feel obligated to do something for us. So, rather than saying, "Please let me know what I can do to help," and making the recipient think of something while not really knowing how much time you have to offer or what skills you have to offer, tell them what you are willing to do.  Set boundaries for yourself and make a practical offer of help within those boundaries.  I loved when someone would say, "I can pack boxes from 10am-noon on Thursday."  Or, "I can come do cast care at 9am on Monday."  Because they were setting their own boundaries, I never felt like I was abusing someone's generosity in those cases.  Plus, it took the burden off of me to feel like I had to create something for someone to do - or to come up with an idea of the top of my head.  By far one of the most helpful things for me was knowing that people had set their boundaries and were offering what they were comfortable giving.  
• Be on call.  Maybe you can't offer specific help or a specific time frame but you are willing to be on call for someone.  Let them know that in case of emergency or a desperate need (like Ellie's diarrhea disasters - these were obviously unplanned and I couldn't really do them alone.)  And if you get called at an inconvenient time, take the burden off of the person in need by working to find someone else to help.  Just knowing you can be depended on when crisis comes up within a crisis meets a huge need.
• Give grace  - heaping loads of it.  I have been a terrible friend/sister/daughter/daughter in law/church member, etc for months and months.  I have depended on others for so much and haven't really been able to give back to anyone.  I have been tired - so tired.  I have been wrapped up in taking care of my children and have often had little time for others.  I forget to return calls or emails.  I send birthday cards late.

And yet, my friends and family have so often given me grace.  They have recognized our circumstances are beyond ordinary and they have given me grace - they have released  expectations on me and I am so thankful.  Know that there may be days and times when the family needs your help and other days when they don't - give them grace to say no (& know that they may very well need you the next time!)

Give grace. 

There may be days when they have no idea what they need.  Give grace as they figure it out.

We are to thankful to have received grace upon grace upon grace for the last four years and especially during spica season.

Thank you for serving our family.

Thank you to so many of you who have served us as the hands and feet of Christ.

We are humbled and forever grateful.

Isn't that what Easter is about?

A God who lowered Himself to become man.  A God who served a hurting mankind in crisis, man who thought we could do it on our own, who strive for independence and stubbornly throughout history have tried and failed, this Jesus, He came and served us by dying on a cross to save us with His blood sacrifice.

He gave grace and He gives us grace upon grace upon grace.  He offers us Himself - not only a chance to survive but an opportunity in grace to thrive.

Isn't that the crux of the cross?  

He served us.  In grace, He saved us.

Yes, I think this is what the Body of Christ does in serving others.  We serve because He first served us. We receive grace and we give grace because He gives grace.

Any ideas for how you may have received grace or given it to others during crisis that you can share in the comments below?

I have learned so much from our friends and family and strangers.  Thank you for loving us and serving us, especially during this spica season.

Hands & Feet

This is the post in which I finally write about hands and feet and I am not referring to either of my children's limb's absences or function.

The view from up here

Have you ever struggled with not hearing from God or seeing Him working? Perhaps it's a difficult marriage or a rebellious child or an ill parent. Have you tired of praying and seeking and yet not being relieved of your circumstances?

Recently, I've struggled with feeling abandoned. I know in my head that God is always present. But my soul is weary.

I know He answers every prayer - just not always in the way I pray or in the timeline I seek.

My heart is weary.

It's not that I don't celebrate my children exactly as they are or praise God for creatively creating them. I do.

It's just that the drain of doctors and impeding surgeries and major medical decisions and therapies and answering rude questions in public from those who notice a disability instead of a child is taking a toll.

And so a few days ago, I told Him I was feeling abandoned. I told Him I understood David, the Psalmist better than ever.

I understood why David would cry out,

Long enough, God- you've ignored me long enough. I've looked at the back of your head long enough. Long enough I've carried this ton of trouble, lived with a stomach full of pain...

(psalm 13 - MSG)

And then I suddenly remembered a scene.

Then Jesus went with them (His disciples) to a garden called Gethsemane and told his disciples, "Stay here while I go over there and pray." Taking along Peter and the two sons of Zebedee, He plunged into an agonizing sorrow. Then He said, "This sorry is crushing my life out. Stay here and keep vigil with me." (I like how the NIV says "My soul is overwhelmed with sorrow to the point of death.") Going a little ahead, He fell on His face, praying, "My Father, if there is any way, get me out of this. But please, not what I want. You, what do You want? When He came back to His disciples, He found them sound asleep. He said to Peter, "Can't you stick it out with me a single hour?..." He then left them a second time... When He came back, He again found them sound asleep. They simply couldn't keep their eyes open. This time He let them sleep on and went back a third time to pray, going over the same ground one last time. when He came back the next time, He said, "Are you going to sleep on and make a night of it?" (Matt. 26:36-46, MSG)

And then, finally, this gripping scene came to mind:

From noon to three, the whole earth was dark. Around mid-afternoon, Jesus groaned out of the depths, crying loudly, "Eli, Eli, lama sabachthani?" which means, "My God, my God, why have you abandoned me?"

(Matt. 27:45-46, MSG)

And it hit me,

that is abandonment.

When Jesus took on the sins of the world, His Father turned His face.

When He asked His friends to keep a vigil as He fervently prayed, they didn't pray with or for Him or even keep their eyes open. They slept. Three times.

Jesus knew abandonment.

I am clearly not abandoned.

And as I did the dishes Sunday morning in this condo in the clouds, I felt the Lord gently, lovingly show me what an idiot I am.

A beloved idiot.

Because even though I may not always feel Him. And even though He may not respond to my prayers in the timeline I think I would prefer,

He is present.

And He has sent His hands and feet to minister to me.

He is sending people like Saint Sherry to satisfy our stomachs. She is going on 4 weeks of providing meals daily to us. And by meals, I should mention that she was in catering for years and is a fabulous gourmet cook. She brings delicious entrees and beautiful sides like stuffed tomatoes or yummy roasted sweet potatoes and every meal is loaded with fresh, organic ingredients. And, along with dinner, she often brings food for our lunches like soup and chicken salad and even breakfast casseroles, fresh fruit, and muffins made from scratch! I have no idea when she finds time as she clearly spends her days in the kitchen but she read back through my blog at one point to determine foods that Will liked! She even made him a fun soccer cake after his first soccer practice last week. Seriously, she is a saint. Plus, she has a grandson Will's age so today, she and my mom took the boys to the park to wear them out let them play while Ellie and I were at the doctor. Thank you, Sherry! You are blessing our hearts by providing healthy, delicious meals so that we don't have to think about food on our busy days. When Ellie was suddenly put in the hospital recently, R flew in to be with us and Sherry made him lunch and picked him up at the airport - having never even met him.

And there's John, her faithful delivery man. He works hard all day only to come home and find meals waiting for him to get back in his car, fight traffic and deliver to us. (And I'm guessing he finds dishes to be done and a tired wife too!)

You have blessed us more than we can say. Our stomachs thank you too! Thank you for providing meals and giving us the gift of time to rest or play with Will and not put forth the energy to plan and cook.

And there's other local friends who brought meals when we first got discharged from the hospital.

And though I may feel alone on my journey,

He has sent people to walk beside me...

sometimes quite literally.

There are friends who have travelled a long way to see us (across the state with children for some or by airplane from other states!) And friends who have brought their children to play with Will. And friends who have fresh energy to give to Will when we are so drained. And friends who come visit, even when I forget they are supposed to visit and turn off my phone to take a little nap... and yet the friend perseveres, forgives me, and comes another day (Thanks for understanding, Diann!)

And there's the friends that send loving, encouraging emails exactly when I need them. There's friends who aren't afraid to speak the truth. There are friends who have shared their own personal stories of painful life events - offering me wisdom, advice, counsel, and a shoulder to cry with. There are total strangers who comment on the blog (it still amazes me when anyone reads it - I write because it is like therapy for me - but cheaper.) There are strangers that have emailed me. This so encourages me and makes me feel less alone in our journey. There's the friends who text - at just the right moment. There's the friend who emails me random ramblings from home. I enjoy reading her emails while I nurse - just to keep up with friends and life and it feels so normal (Thanks, Maria, for keeping me up to date on life back home.)

And there's friends I know I can fall apart to. I can call anytime and they set aside their life and listen to me or let me cry or vent my frustrations and fears.

They acknowledge that this is hard. They don't minimize what we are experiencing. They recognize that our situation is unique and that there is a wide spectrum of emotions we deal with.

They meet me where I am at. And they help pick me back up.

They encourage my heart in so many ways, whether or not they are even aware of how perfect their timing often is.

And they love my children.

And they have prayed with me that my children will grow and live to be friends with their own children.

How thankful I am.

And our parents, our children's grandparents. We couldn't do this without their support. And it's not short term. Our children will face challenges their entire lives. We are so very thankful for their unending support and flexibility to be available to live here during the week and help us.

And when I am overwhelmed, He has sent His hands and feet in the medical field.

There's family friends like Dr. Rick or Dr. Mike. They provide me with frequent "translations" of medical jargon. I know I can email or call them with my numerous questions. I am so thankful for their expertise and experience in helping me navigate the medical field.

And when I don't even know what my needs may be, He sends His hands and feet to provide in ways I never imagined.

And there is the friend, EJ, far away who thought to send a newspaper from the day Ellie was born - who knew we would be so consumed with seeing her alive that we might not think to pick up a paper to remember headlines by.

There are old friends and new friends and friends I've never met who have sent precious gifts - gifts that celebrate her birth.

There are the activities sent for Will to keep him busy while I nurse or do therapy or we sit in doctor's waiting rooms with Ellie.

There are the relatives who are often more like friends who have faithfully sent us airline gift cards for months... and who always manage to creatively give them for some random holiday in any given month! These are a huge help with our overwhelming travel expenses.

There's the other new friend, also met on the blog, who is on a similar journey with a baby and, though we have never met, I am often so encouraged by her emails - it makes the road less lonely.

There's Laura & Caroline, who have opened their home up numerous times to keep Will while I have endured long doctors appointments - both in my pregnancy and since Ellie's birth. And she lets me vent and cry freely when I need to. She's also like my own personal Dallas tour guide who I go to with all my local questions!

And there is the sunday school class from a church that we don't even attend who sent us visa gift cards to help with our expenses.

And there is the church in a town we've never heard of that has sent us prayer cards to let us know someone is praying for us.

And there's the pastor, from a church we don't belong to, that came to the hospital on Ellie's birth day to pray with us.

There's flowers that have arrived - helping us remember to celebrate.

There's meals that have come from other towns - frozen already so that we don't spend time planning meals or cooking but can spend time at doctors or resting or doing therapy or just trying to enjoy my children. There's another caterer back home, Jeri, that sent yummy frozen meals.

There's the friend who has already selflessly offered to be available to help me when I get home for our three week break and begin doing life again - plus therapies for everyone. (Minus me - I just get to blog for my therapy.) Thank you, Cami, I'm counting on you!

There are the friends who check on our home. There is the family who for weeks got our mail and made sure our bills got to us here in Dallas. Thank you, Kim!

There is the petsitter who generously is providing free care for our cat. Thank you, Reesa!

There's the neighbors and dear friends who provide R a homemade meal every Tuesday night - which besides filling his stomach, forces him to leave his office at a decent hour and spend some time with people. We are indebted for so much, Beards- you have gone way above and beyond being a good neighbor.

There are the families who have opened their homes for our high-maintenance beloved golden retriever.

There are the friends who have watered our flowers daily in the hot Texas sun. Thank you, Stevie.

There is the family on the east coast who sent us a surprise check to help with our many extra expenses. Thank you!

There's the family that has loaned us a condo to live in here while we are getting treatments for Ellie. We have been able to set up a "home away from home" for Will - to have several bedrooms and bathrooms and a living area so that we can make a home- space we would not have had in a hotel or a Ronald McDonald House. And they are providing it to us for free! Thank you, Jane, for giving us a home here!

There's a soccer coach that threw my check onto my dashboard and insisted on letting Will play for free while we are in town as he realizes we are under such stressful circumstances.

There are people praying when we run out of words to do so ourselves.

There are people doing so many creative things to help us or love us. There are too many to name and count. We are thankful for each of you.

We are not abandoned.

He has sent us His hands and feet in so many forms.

We are humbled by how so many have invested in our children, our marriage, and our lives.

Thank you for finding such practical ways to serve us.

Thank you for thinking of things we would never have thought to ask for or even have known we would need.

Thank you for encouraging our hearts with your texts, calls, letters, emails, and comments.

Thank you for visiting.

Thank you for lifting us up when we couldn't do it ourselves.

Thank you for giving us grace when we have nothing to offer you.

Thank you for helping to bear our daily, practical burdens so that we can celebrate our children.

You have taught us so much about generosity and servanthood.

Thank you for using your time, talents, and money to serve us.

Thank you for being His hands and feet.

And, so, he gently reminded me of exactly how not abandoned I am. The Lord has been faithful and He will be again.

Because even when I don't understand His methods or His timeline, I am never alone. He has surrounded me daily with someone, somewhere to serve me in some capacity, to love me, and to walk beside me.

How quickly I was humbled.